The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
I did actually because this actually has reminded me of a lot of things having this conversation. The, the breathing apparatus that Victoria mentioned but along with that I would say don't be embarrassed to walk around with your post-surgery pillow. Don't be embarrassed. It is your best friend, absolutely your best friend.
And so and Lauren, when, you said that you started to feel normal when you started driving. For me it was being able to wash my hair by myself when I started that was, when I started to feel normal so just those moments where you were saying you have to have other people bathe you and all of that really just bring cleansing wipes with you to the hospital. That's something I wish I knew before and dry shampoo before the, before I had my surgery because it's those little moments where you just need to have little comforts that those were things that I wish I knew before surgery was to have those things that made me feel clean and made me feel refreshed.
Sometimes, you know, they're really not little. They're actually big.
そういったことは、小さな事かもしれませんが、大事なことですね。
Oh huge.
すごく重要だと思います。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
David, is there anything else that you tell your patients ahead of time before they go into surgery? You're on mute.
では、David先生、手術前に患者さんに知っておいてもらいたいことはありますか？
So one thing I do tell is what Lauren has been talking about, what Victoria's talking about is that people expect the physical portion, the pain and fatigue and I always, I don't know if I don't remember I gave you the talk but I usually do, I usually sit down with people especially just before discharge I talk about, talking about the psychological and emotional aspects of having gone through what you've been through.
Even if things are going well people expect, "Wow, I just made it to big surgery," you know, "I've survived," and everything but there's a big letdown, right? you know, you've worked yourself up to it psychologically and and then suddenly it's just drawn out from underneath you and so, you know, so it's not uncommon to get depressed, you know.
...because depression afterwards is very, very common, you know, and it's, it's, you know, you're, it's what you can't do but also I, I, you know, the all the things that you've been through leading up to it and such, it takes a lot out of you psychologically, emotionally.
So I always warn people about the possibility of being depressed and having somebody to talk to and monitoring yourself. I tell the family to monitor people, see how they're doing, okay? you know, and you know, and, and reach out for help if, if you do think that way so, you know, the medications work sometimes. They actually work quite well in fact for that type of depression even though it's not quote, you know, "major depression."
The, the medications we give for depression actually help and actually they help better even they get you over that hump but, you know, but if anything more there's support from your family and other people and also like you said giving yourself a little break and understanding what's happening there.
So if you break down and cry, okay? even though everything's going fine you haven't gone crazy, okay? This is just, it's part of the process of letting your body and mind get back to normal.
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
David, is there anything else that you tell your patients ahead of time before they go into surgery? You're on mute.
では、David先生、手術前に患者さんに知っておいてもらいたいことはありますか？
So one thing I do tell is what Lauren has been talking about, what Victoria's talking about is that people expect the physical portion, the pain and fatigue and I always, I don't know if I don't remember I gave you the talk but I usually do, I usually sit down with people especially just before discharge I talk about, talking about the psychological and emotional aspects of having gone through what you've been through.
Even if things are going well people expect, "Wow, I just made it to big surgery," you know, "I've survived," and everything but there's a big letdown, right? you know, you've worked yourself up to it psychologically and and then suddenly it's just drawn out from underneath you and so, you know, so it's not uncommon to get depressed, you know.
...because depression afterwards is very, very common, you know, and it's, it's, you know, you're, it's what you can't do but also I, I, you know, the all the things that you've been through leading up to it and such, it takes a lot out of you psychologically, emotionally.
So I always warn people about the possibility of being depressed and having somebody to talk to and monitoring yourself. I tell the family to monitor people, see how they're doing, okay? you know, and you know, and, and reach out for help if, if you do think that way so, you know, the medications work sometimes. They actually work quite well in fact for that type of depression even though it's not quote, you know, "major depression."
The, the medications we give for depression actually help and actually they help better even they get you over that hump but, you know, but if anything more there's support from your family and other people and also like you said giving yourself a little break and understanding what's happening there.
So if you break down and cry, okay? even though everything's going fine you haven't gone crazy, okay? This is just, it's part of the process of letting your body and mind get back to normal.
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
So, so I don't know if everybody saw but Dominga wrote this great blog post on our blog about top five things that she wish she knew before aortic surgery. I wanted and I'll put, I'll, I keep saying I post some things in this chapter. I'm listening to you guys, haven't done it yet, I will share that blog post again.
But let's go to Peter, was there anything that you wish you knew before surgery that you want to tell people tonight? We have over a hundred people listening.
I mean, we've, I think beaten this horse to death I'm fatigued and definitely fatigued if you think, you know, how fatigue you're gonna be you don't, like multiply it by a hundred like I, I remember waking up just being absolutely out of it barely paying attention to the Bruins playing in Stanley Cup on the TV but like, it's like, it, it's definitely something that I wish I had like remembered, are known beforehand because definitely fatigue. It's definitely like that is a big part of your post surgery life.
Yeah, I think there were, there were two things, especially one of the things that Domingo did say I was having a really bad day. One, one of the days I was getting really sick. I had a really high fever. I was shaking and then, you know, just like Dr. Liang said you have to do your breathing and your walking. Those are two things that I could tell people. You have to use your breath, oh my gosh, I forgot the name of it.
Thank you. I don't know how I could forget that my, my mind tried to block it out. If you do your breathing and your walking things will be so much better.
But you have to remember that you will have bad days so I think one of the things that I wish I knew before was that even if you have 10 awesome days in a row where you're like, "Wow, I feel back to normal again," and then the next day you wake up and you feel like you got hit by a bus even if you didn't do anything like too wrong.
It's, you're still on your recovery journey and you're okay. You're still okay. You just have to push through it and that's something that I really like to tell people is that don't get too down about it, you know, even though I, I did on occasion just remember that you just went through something very traumatic not only mentally but physically and your body is still healing just like your mind is. That was something really bad for me.
Great advice. Lauren, how about you, I mean, you, it was not planned so now in retrospect, what are some things that you would tell somebody else who's going through that not emergency but, you know...
I mean echoing what Peter and Victoria said just that it's a journey and yeah, exactly what you said would there be days where I'm like, "I feel great. I'm doing great.” and then I'd like push like, "Oh, I'll just do a little bit of work or I'll just check email or oh," then the next day, I'd feel terrible. I'm like, "What did I do to myself?"
So you see like this constant battle, especially with young people just like, yeah like, "Okay, I need to be patient with myself and give myself some grace," but also, you know, keep moving forward not just stop where you're at and for me, I mean, the whole experience was brand new and so that's where I was like, "I didn't know what to expect."
And so I think the biggest, yeah, what I wish I knew before was just the emotional journey that it would be and just yeah processing all that not feeling like "I'm a burden on other people" or like, like being an independent person and then suddenly being dependent. I think that was a big shock for me.
I mean, you need help to go up the stairs, you need help to walk, you need help to bathe, I mean, you really feel like a child like you're like, "I need help with all these things" and so I think being patient with yourself and asking for help when you need it.
That's an, that's great point, that's an awesome point, Lauren.
Lauren、感動しました。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
I don't, I mean, I can give my personal story with it. So I was diagnosed at 16 and, you know, they always said that it would be, you know, a risk factor obviously to get pregnant, so that was always something, you know, 50-50.
And then after surgery, you know, I met with my cardiologist. I met with a high-risk ob-gyn, who is in the Marfan community and a geneticist and just like Dr. Liang said, it's really, it's dependent on the person.
And it's kind of like all they can really say is that you're in a gray area even though your aorta is fixed just like we all know it's not, your risk isn't minimal, you know, zero for everything else, so it really is a personal decision that you definitely have to make.
But I would personally say make sure that you talk to all the right doctors so that you can make the right decision for you and just make sure that you're making the healthiest decision for you.
Does anybody else have anything else to add to that or you're good? Okay, great. So what did you want...
その他に意見のある方はいますか？
Victoria, no I was just gonna say if anything Victoria actually has an amazing blog about her a whole experience. I'm sorry shameless plug for Victoria but she has an amazing, so she says that I was her surgery- sort of guru. She's been my IVF pregnancy guru and so that's if you're looking for some information on that she has an amazing blog. That's extremely helpful to find that, that way that is right for you .
We also have done some webinars on family planning and what different options are whatever you are the, whether you're the, the one with Marfan or you're the partner, so there's, there's a lot of options and we have, we've talked about that a lot. We will continue to do so as, as we learn new things about it.
The Marfan Foundationでも、妊娠・出産に関するオンラインセミナーをいくつか開催しました。どのような選択肢があるか、Marfan関連疾患かどうか、あなたがパートナーの場合はどうするかなど、既にお知らせしていることですが、多くの情報があります。今後も新しい知見が得られ次第、お知らせしていきます。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
There's something else a lot of people asked about and I'm going to go to David first and to you on this as well and we'll see if anybody else wants to comment. There are a lot of questions about getting pregnant after having aortic surgery, so I know nobody here has had babies yet, we're not gonna, I'm not gonna ask personal questions but David, can you...
I haven't had a baby, either. I'm sorry I can't help you.
私は出産の経験がありませんので、お役に立てず申し訳ありません。
You also probably had aortic surgery, either but anyway you just what are your recommendations for young women who have had aortic surgery, not about having a baby or the Marfan or not, but just the mother's side, the health side.
So, so okay, so it depends what the state of the aorta is, obviously if, if it's an emergency surgery and sort of residual dissection that's obviously a more challenging issue, okay? it's not impossible, okay? but definitely carries more risk and we're really in sort of an area where we don't have a lot of data on, okay?
But if the aorta's relatively small I wouldn't forbid it. I was, I would encourage other options if possible so I get more sleep. In terms of how about if you've had, you know, prophylactic surgery and so your aorta is relatively normal afterwards with the remaining aorta relatively normal, you know, then I would, I usually tell my people there is still some risk, okay?
And so if the experience of carrying a child is not something that, you know, something that you have to have, which, you know, and I, I don't understand that being overweight and sweaty and having to pee every five minutes. I'll never understand. I don't have the right set of hormones to do that, so but, but that seems to be something that some people want to do. About half the population in the world seem to want to do that and so those people, you know, you just have to weigh that, right?
And, but generally the risk if you, if you don't have any residual aneurysm the risk is probably pretty low. There are reports of people having dissections in the remaining aorta during pregnancy even after having had their root repaired, so it's not without some risk, okay? and I think you have to be aware of that but, you know, we balance life, we're always balancing risk versus benefits and so if that experience is something that's very important for you, you know, we'll, we'll work with you through the process.
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
